Gold Ribbon Hero Lauren’s Story: DIPG

Monthly Archives: May 2016

Lauren Hill’s Story

May is National Brain Tumor Awareness Month. As this month of important awareness and advocacy activities draws to a close, we would like to take this opportunity to shine a spotlight on one of the most devastating forms of childhood cancer—Diffuse Intrinsic Pontine Glioma (DIPG)—by sharing the well-known story of Lauren Hill, a high school basketball player who was diagnosed with this deadly form of brain cancer at 18, during her senior year of high school.

Diffuse Intrinsic Pontine Glioma, or DIPG, is a highly aggressive brain tumor that develops within the brain’s glial tissues, which support and protect the brain’s neurons. The cancerous cells become interwoven with healthy cells in the area of the brainstem known as the pons, which is responsible for our body’s most basic functions like breathing, heart rate, and blood pressure. DIPG does not respond to chemotherapy and radiation, today’s standard tools in the battle against most forms of cancer. Because of its diffuse nature and location within the brainstem, it is inoperable. And its long-term survival rate is effectively zero; about half of all children diagnosed with DIPG will die within nine months of diagnosis.

A DIPG Ambassador

Lauren Hill was one of approximately 300 children diagnosed with DIPG in 2014. During the short time she battled with this deadly form of brain cancer, she gave this rare disease a public voice and a national face. Unfortunately, DIPG only develops in children, usually between the ages of five and nine, children who are too young to bring attention to their fight. Despite knowing that she probably had only months to live after her diagnosis, Lauren used that time to raise public awareness about this rare cancer and to highlight the critical need for more research into new and different treatment mechanisms.

Lauren Hill: One More Game

Lauren was diagnosed with DIPG after her high school basketball coach noticed that despite being one of the hardest working and most skilled players on the team, Lauren was having trouble keeping up with the game. She began falling and couldn’t catch passes with the same accuracy. Then Lauren began noticing other troubling symptoms as well, such as a tingling sensation on her right side and a numbness in her tongue. Yet despite the grim diagnosis, Lauren was committed to continuing to live her life to the fullest: she continued to play basketball on her high school team while undergoing chemotherapy. And she was determined to look forward, anticipating life as a college student at Mount St. Joseph University, where she had been recruited to play on the school’s Division III basketball team.

Unfortunately, as usual with DIPG, Lauren’s tumor did not respond to either chemotherapy or radiation, and by the beginning of her freshman year, MRIs showed that she probably did not many more months to live. Still, she continued to participate in her freshman classes, often turning in handwritten homework as use of a computer screen triggered agonizing headaches and vertigo. She continued to work towards her dream of playing in a college basketball game, even practicing left-handed lay-ups to compensate for the growing weakness in her right side. When it became clear that the team’s season opener on November 15 may come too late for Lauren, her coach obtained permission to move the game up to November 2, just so Lauren could play. Lauren played the game of her life, and at the same time used the game to bring national awareness to this devastating disease.

Lauren’s Legacy

In the six short months between her diagnosis in October 2014 and her death on April 10, 2015 at the age of 19, Lauren became a hero. Even knowing the odds against her, she never gave up her fighting spirit. She actively decided to use the time given to her to become a public voice in the fight against DIPG, knowing that most DIPG warriors are simply too young to make their voices heard. And her legacy lives on. The foundation she started continues to raise money for research towards DIPG and other forms of brain cancer and childhood cancer. But more importantly, the story of her fight and her determination serve to inspire the many other childhood cancer warriors whose battle with DIPG may not be as public, but are just as courageous and inspiring.

ACCO’s DIPG Book

ACCO offers the only book in the world that is devoted to DIPG as one of our educational resources that we provide free to families currently in treatment.

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about other childhood cancer warriors, to learn more about childhood cancer and the ACCO, or to order free resources for you or your child, please visit our website at www.acco.org.

Nico’s Story

We have been asked to share the story of a very special childhood cancer warrior, Nico. Diagnosed with Stage 4 Osteosarcoma at the age of 6, Nico is in the final months of chemotherapy and is anticipating the results of several very important scans and tests that will confirm—hopefully—that he has finally beaten this disease. Throughout his treatment, Nico has shown strength and resilience beyond what we might expect from a young child, facing every new turn of events with a smile for his doctors and his family and giving inspiration to an entire community, both local and nationwide. This community now offers their hopes and prayers to Nico and his family for a successful end to this brave childhood cancer warrior’s long cancer journey!

Nico’s Cancer Journey

On April 28, 2016, Nico turned eight years old. Of course all boys love to celebrate birthdays, preferably with as much birthday cake as Mom will allow! For Nico and his family, however, this birthday is particularly special because it brings them within sight of the potential end of scheduled chemotherapy in July. And it is particularly special because, as with all childhood cancer warriors and their families, every birthday is one more victory in the fight against this terrible disease.

Nico began his cancer journey in October 2015 with the devastating diagnosis of osteosarcoma, a form of cancer in which one or more cancerous tumors begin to grow on a bone. In Nico’s case, the tumor was located on a rib bone, close to his lungs. In many cases, osteosarcoma, the most common form of bone cancer, is diagnosed early in its development, greatly increasing the chances that treatment will be successful. In Nico’s case, however, the news was not good: Nico’s cancer was diagnosed as stage 4 osteosarcoma, meaning that the tumors had metastasized (or spread) from the original tumor location into other areas of the body. His team of oncologists located nine rapidly-growing nodules, or tumors, in his lungs. Devastated by this news, Nico’s family agreed to begin chemotherapy immediately.

After his initial round of chemotherapy, the next major milestone occurred in January, just three months after the initial diagnosis: Nico’s oncology team surgically removed the original tumor, along with four ribs, and performed thoracic surgery in the left lung to remove nodules. Chemo was on-going before and after the surgery, but in April, Nico began having seizures and doctors diagnosed a large mass in his brain. He underwent a second surgery in May to remove the mass, but unfortunately, this complication affected his mobility on his right side, and now in addition to chemo, Nico has regular therapy to overcome these mobility problems. Then, in August, a scan showed the formation of more nodules in the left lung, which were again surgically removed.

Throughout this long journey, Nico has continued to undergo both in-patient and out-patient chemotherapy to target any remaining cancerous cells and prevent the growth of more. Now, as his family begins to anticipate the end of his scheduled chemotherapy, his tests are showing positive signs: no additional nodules have formed and some remaining lesions in the lung have shrunk. In fact, Nico’s doctors believe that the suspicious lesions may be residual scar tissue from the two prior surgeries.

The Waiting Game

The final months and weeks of cancer treatment can be a challenging time for families. Parents, siblings, and the patients themselves are excited at the prospect of a “normal” life, yet it’s also a time of high anxiety, especially for parents, as they anticipate what the next bump in the road might look like. As Nico’s Mom states, “I am now grilling the doctors with endless questions about [the] post-treatment process, prognosis, side effects…a good place to be but I may be driving them nuts!”

Mostly, this phase of treatment is about waiting, hoping, and praying. Waiting for the final tests to show that the last of the cancer cells have finally disappeared from Nico’s young body. Waiting for that one last test to make sure, really sure, that those shadows really are just scar tissue and not more cancer nodules. Waiting for the next follow-up visit to make sure, really really sure, that the cancer has not returned.

Yet throughout his journey, and in this final stage of waiting, Nico’s amazing and positive attitude has never wavered. He has shown his family and his community just how strong, just how brave, one small boy can be. Nico and his family hope that you will wait with them, offering them your ongoing prayers, best wishes, and support, as they face this phase of the cancer journey with the same strength and determination that has seen them through their journey thus far.

If you would like to follow Nico’s journey and show his family your support, we encourage you to visit the Team Nico Facebook page at:

https://www.facebook.com/Team-NICO-987643321251952/timeline

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about other childhood cancer warriors, to learn more about childhood cancer and the ACCO, or to order free resources for you or your child, please visit our website at www.acco.org.

Join Us to GO GOLD for Kids With Cancer®! International Childhood Cancer Awareness Month, September 1-30, 2016, is coming up fast and we want to be ready with more GOLD LIT buildings, landmarks and locations around the world, starting with your area.

As the only U.S. member of Childhood Cancer International(CCI), ACCO invites you to GO GOLD® by joining the global campaign to LIGHT UP THE WORLD GOLD this September. To assist you in this awareness effort, we have prepared a request letter and submission form for you to use to reach out to location contacts in your area and beyond. Please feel free to cut/paste the letter to distribute or share the distribution form link to those who can help

We ask that you please register your participation by completing the submission form below so that we can track the success of this united effort and to raise awareness of the global burden of childhood cancer. When completing the form, please be sure to attach your photos after the event so we can include them in the album, our blog, social media, add them to the interactive map and continue to raise awareness!

To see the countries and locations of committed locations to date simply scroll down past the album and view the

For Jisele, this May has been an eventful month! On May 15, Jisele celebrated her seventh birthday with a beautiful pink princess cake and the perfect birthday present, a doll named Rapunzel. “I played with her and watched her play and it was awesome. To see her having fun and being a normal kid is the absolute best feeling in the world. I am so lucky to call her my daughter,” said her father, Juan. Just five days later, on May 20, Jisele celebrated her three-year “cancerversary”, the third anniversary of the childhood cancer diagnosis and the start of three long years of treatment. It’s been a long journey for Jisele and her family, but they are now looking past her final treatment this month and savoring the anticipation of many more “normal kid” birthdays to come!
Jisele’s Dad Juan celebrated May in his own way as well, by getting his third childhood cancer awareness tattoo. We are extremely honored that for this latest tattoo, Juan chose the official symbol for the American Childhood Cancer Organization:

As soon as I saw it, I immediately knew this was the one. It has great meaning to me. It symbolizes a father holding his daughter with his hand/body around her, cuddling her as she rests in his arms…Daddy loves you, Princess, and as I said and always do say, I will forever spread awareness and support for you and all the other kids battling this monster called childhood cancer. One step at a time, together, we will spread awareness.

Frankly, we could not have described the symbolism of our logo any better! Thank you, Juan, for taking the time to share Jisele’s story with us and helping us raise awareness about childhood cancer and the bravery and courage of Jisele and all childhood cancer warriors.

Jisele’s Leukemia Battle

On May 20, 2013, at 2:27 in the afternoon, Juan received the news that hisbeloved daughter Jisele, just past her fourth birthday, had been diagnosed with Acute Lymphoblastic Leukemia (ALL). The most common form of childhood cancer, ALL begins in the cells of the bone marrow, the soft center of the bones responsible for generating new blood cells, and spreads quickly into the blood and other areas of the body. An “acute”, or quickly growing, form of cancer, treatment for ALL begins immediately. On May 20, Juan was told that the oncology unit at Massachusetts General Hospital was already waiting for him and Jisele to arrive.

The standard treatment for ALL is several months of extremely intensive chemotherapy (“chemo” for short) utilizing highly toxic drugs tailored to kill the cancerous cells in the blood and bone marrow. If the first two phases of chemotherapy are successful—meaning that 99.9% of the cancer cells have been eliminated and the cancer sent into “remission”—less intensive chemo will continue for about two years to ensure elimination of the remaining cells before “NED”, No Evidence of Disease, can be declared.

This, in brief, is the outline of treatment that Juan received in those first traumatic days after diagnosis. But these words couldn’t prepare him for what Jisele would have to endure. While the drugs required to beat ALL are toxic to the cancer invading Jisele’s body, they were also toxic to the rest of Jisele’s young body. The side effects of chemo are both brutal and terrifying for patient and parent alike: hair loss, vomiting, constant soreness, and severe muscle and bone aches are often just the beginning. Yet Jisele faced the daily injections, the spinal taps and port placements, the endless rounds of blood work, the surgeries, and even the soreness and sickness with a smile on her face and fight in her heart, showing her family, her community, and herself the true meaning of courage and survival.

Spreading Awareness Forever

For Juan, the last three years have been a life changing event, and he has dedicated himself to the fight against childhood cancer as completely as anyone possibly can! In addition to his awareness tattoos, he is now organizing multiple awareness projects, and routinely carries with him “awareness cards” that he can distribute to anyone willing to lend their ear and their aid to his battle. Juan says his inspiration comes from seeing his daughter’s courage and strength every day as she battled this “monster”:

“You are my true hero. I am so proud of you. Together we are warriors…nothing will beat us. I love you!”

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about other childhood cancer warriors, to learn more about childhood cancer and the ACCO, or to order free resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

“Reason this person is a Gold Ribbon Hero: Owen was diagnosed with a Disseminated Oligodendriglioma Brain Tumor and Hydrocephalus at 6 months old. He is now almost 2 and has spent most of his short life on chemo. In his first year of life, he spent 98 days in the hospital. He has had three brain surgeries and one surgery to implant a port for chemo in his chest. No matter what he has had to endure or how sick he feels, Owen still finds a way to smile and laugh. By just looking at him and watching him play, you would never expect that he has brain cancer. It does not define him and he never lets it keep him from acting like a typical toddler. His strength and courage inspire everyone he meets!” – Jennifer M.

“Reason this person is a Gold Ribbon Hero: My daughter, Angelyna Celeste was diagnosed with osteosarcoma of the right distal femur on 08/14/15, started chemotherapy treatment on 08/15/15, had limb salvage surgery (radical resection of the rt. distal femur and total knee replacement) on 11/24/15 but due to chemo her wound was not healing properly and had a debridement on 02/13/16 and completed treatment on 04/08/16. She fought hard and always had a smile on her face, because of this she is my hero! You can also follow her journey on Facebook at “Angelyna’s Fight Against Cancer”. – Victoria S

“Reason this person is a Gold Ribbon Hero: Caidin Michael was diagnosed with Neuroblastoma 4s at 2 weeks old. He is 6 months now and has been fighting everyday for his little life. he is the strongest lil boy I know. He has had 6 rounds of chemo spent most of his 6 months at Dells Children’s Hospital for treatment. He is getting ready for stem cell transplant in San Antone June 6th. Our whole family is praying for my grandson, please pray with us for a cure for this horrible disease called cancer. Caidin is my little hero.

The family is taking donations at gofundme.com/samantha moreno(mother) for travel expenses and help to pay bills as they cannot work right now, all there time is spent taking care of Caidin and his lil sister trying to take one day at a time.
We pray for all the little hero children and families that are dealing with this.
#findacureforcancer” – Francine P.

Owenn’s Story

We’d like to introduce you to one of the ACCO’s Gold Ribbon Heroes, and we hope that you will take a few minutes out of your busy schedule to read Owenn’s story. We have chosen to highlight Owenn’s story today because we believe that while there is nothing typical about Owenn’s life thus far, he typifies what is so special about childhood cancer warriors: their courage, their strength, and their determination to never give up! As Owenn’s mother Jennifer writes, “The name Owenn means ‘young fighter’ and that’s what Owenn is, a young fighter.”

Owenn’s Fight

Owenn’s fight began literally at his first breath. Born with the umbilical cord tightly wrapped around his neck, Owenn could not breathe on his own and required chest compressions to start breathing, a terrifying experience for any new parents joyfully waiting to hold their newborn son. Yet at this moment, when Owenn fought to take that first breath of life, they knew he was born to be a fighter!

In fact, Owenn’s fight had just begun. At 1½, Owenn was diagnosed with cataracts. He underwent two different surgeries to eliminate the cataracts, as well as an additional lens transplant surgery. Then, just six months later, Owenn underwent yet another surgery to put tubes in his ears and remove his adenoids. A whole lot for one young child to go through, yet through it all, Owenn fought bravely to overcome every challenge presented to him in his short life!

At the age of four, Owenn’s parents thought they had seen the worst. Other than quarterly visits to the eye doctors (three hours away!) for routine eye exams, Owenn was a happy, active four-year-old eagerly anticipating the joys and excitement of the holiday season. Then, in late November, Owenn began running a fever. At first, Owenn’s parents didn’t panic; fevers are pretty normal in young children. But the fever persisted on and off for three weeks, and Owenn soon began to exhibit other, more troubling, symptoms: loss of appetite, joint pain, and fatigue and sleepiness. Owenn was just not acting like himself.

The Diagnosis: Acute Lymphoblastic Leukemia

After several trips to the doctor, rounds of medication that did nothing to ease his symptoms, and more intensive blood work and testing, Owenn’s parents received the devastating diagnosis: acute lymphoblastic leukemia (ALL). The most common form of childhood cancer, ALL is, unfortunately, most often diagnosed in young children between the ages of two and four. Leukemia is a cancer of the blood, starting in the tissues responsible for growing blood cells, such as the bone marrow, and causing abnormal blood cells to enter the bloodstream.

Treatment for ALL usually involves an initial phase of very intensive chemotherapy, called induction, in which the cancer cells are bombarded with high levels of toxic chemicals. The goal of this phase is to kill 99% of the abnormal cells and bring the patient into remission (meaning the return of normal blood and bone marrow cells, an important first step but not a cure). This initial phase is usually followed by consolidation, a second round of chemotherapy designed to kill any leukemia cells remaining. The third phase of treatment—maintenance—continues lower levels of chemotherapy for two to three years to ensure total destruction of all abnormal blood cells and prevent the return of the disease. Owenn began the initial phase of his treatment plan immediately with a 12-day stay in the hospital. His team of oncologists has warned his family to expect three years of chemotherapy, most of it on an outpatient basis but probably involving some long-duration hospital stays as well.

After their initial shock, Owenn’s family is optimistic. His friends and community have come together in support of Owenn and his family, at times making this young fighter feel like a celebrity! His family is positive that Owenn will beat his cancer, because just as he showed while fighting for his first breath and through every adversity since, he continues to fight bravely and strongly each and every day. Says his Mom, “He is truly my hero!”

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about other Gold Ribbon Heroes, to learn more about childhood cancer and the ACCO, or to order free resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

“Reason this person is a Gold Ribbon Hero: Juliette was a very healthy baby girl up until February 27th, 2016 when she started to complain that her arms were hurting. After taking her multiple times to the hospital and having to get X-rays done they told us that her arms were broken. The hospital then transferred us to the Dell children’s hospital where they too told us that her arms were broken and that her suspicious injuries would open up a case with child protective services. Child protective services then threatened to take Juliette away from us if a family wouldn’t come live with us and supervise us with our own child. They didn’t believe that we were innocent and they didn’t understand why Juliette took so long to complain about her arms. In my heart I knew something was seriously wrong with my daughter. I had asked multiple times from the beginning for the doctors to check her bones and check her blood because we just didn’t understand how her arms could be broken. On Friday March 4th, 2016 Juliette complained her left ankle hurt and couldn’t walk she also had an interview with child protective services that day but was canceled due to her tantrums and not being able to walk. The cps worker was annoyed and told Julie that she was spoiled and she needed to be taken to the hospital to check her leg. The doctors said she was fine and sent us home. The next day on Saturday March 5th, 2016 she still couldn’t walk and had a low grade fever and wasn’t eating. We immediately took her back to the hospital and I asked one last time for a blood test and our worst fears were confirmed that she had an infection in her blood and the swelling from her ankle was probably an infection in her bones as well. The next day on Sunday March 6th, 2016 they check the fluid in her ankle and thought that it’s could be juvenile arthritis as we took Julie from recovery her heart rate went over 200 and she had a fever of 102. The nurses and doctors swarm all over us and worked fast to bring her heart rate down. That’s when we were introduced to a blood and cancer doctor where she explained to us that Julie’s platelets, blood and white blood cells were extremely low and she thought Julie had leukemia she then asked us if she could do a bone marrow to comfirm it. We agreed and they started her on antibiotics for the infection and gave her 2 blood transplants. Everything was happening so quickly we didn’t have to breathe or think. We were filled with anxiety and uncertainty. The next day on March 7th, 2016 our lives would change forever. The bone marrow procedure took longer than usual and the doctor explained that it was tough to get the sample out because Julie did in fact have leukemia and her bones were 99% filled with it and that’s why here arms and ankle were hurting. They were not broken at all. We all tried to gather ourselves to this shocking news and what would lie ahead of us. We are currently still at Dell children’s hospital here in Austin, Texas and we will be here for a month. Juliette has A.L.L. and she’s doing such a fantastic job fighting this cancer. She got her port inserted on Wednesday March 8th, 2016 and started her chemo that same day. Some days are good and she will drink her medicine and play and have fun. Some days are not good and she’ll get sick and throw up and won’t take her medicine because of the chemo. She will be on treatment for 2 1/2 years. This year she will go to chemo every week and next year she will go every month. I recently quit my job so I can take care of her. It’s going to be tough for us financially and emotionally to adjust to our new lifestyle once we go home. Please pray for her and help support us through this difficult journey. We created a you caring Fundraiser for her we really don’t have a goal but anything helps. https://www.youcaring.com/juliette-gordillo-565552 it would mean a lot if you would share her story thank you.” – Michaela G

“Reason this person is a Gold Ribbon Hero: Lexi was diagnosed with Rhabdomyosarcoma when she was just 18 months old. Her tumor was on the base of her tongue and later turned into Ectomesenchymoma. Lexi spent most of her time in the hospital. She endured many surgeries, chemotherapy, radiation, scans, blood draws, and the list goes on and on. Her last chemotherapy dose was adult strength because they didn’t have anything else to fight her cancer. Alexandria did have about a year of remission from 2014-2015 before it came back more aggresive than ever. In December of 2015 she had a major oral surgery to remove the tumor. With this she also lost 95 percent of her tongue, but this was our last hope. She seemed to be healing great. Out of nowhere on February 13, 2016 we lost our baby girl due to a pulmonary embolis ( a common side effect to cancer). Through it all she was able to smile, dance, put crazy make-up on, and take care of her baby doll. Her beautifully strong spirit will always live on.” – Elizabeth G

The American Childhood Cancer Organization is a 501(c)(3) public charity, whose programs and services are funded entirely by private donations, foundation grants, and corporate contributions.
IRS Tax ID 52-1071826 All donations are tax-deductible as allowed by law.
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